Matthew West - Save A Place For Me

I love you Nick. I will be there soon. Mom

Tears In The Ocean, Footprints In The Sand

I remember when Nick was born one of the first things we noticed was his BIG feet. They were still adorable baby feet, but, he was a big 8lb. 11oz, three weeks overdue, boy, with big feet. When he was a baby, I loved to play with his toes and tickle his feet, as all mothers do. I remember playing "this little piggy" with him and how he would laugh when it came time for the piggy to go "Wee wee wee all the way home." Nick had the misfortune to inherit his Mama's crooked fourth toe and he had the longest toes of anyone in the family. Those toes were like fingers and while those toes were often the brunt of many a joke, they were world renown in his circle of close friends. Nick had huge feet, size 13! His favorite Birkenstock sandals and his tennis shoes still sit up in his room. I remember one time in the hospital, Nick had gone off the floor for a test. I was worried and then a stretcher came rolling around the corner. The first thing I saw were Nick's big old feet (with his Birkenstocks on them) hanging off the end of the stretcher (Nick was so tall, he never quite fit on the stretchers) and I knew immediately who those big feet belonged to and I laughed as I breathed a sigh of relief that he was back to his room, safe and sound.

As I continue to fight my way through this grief, I am always searching for ways to keep Nick close to me. Anything I find that has his name, his handwriting, his voice, they all bring me a small measure of comfort in this barren wasteland of loss. I don't know why it didn't occur to me earlier, but, I suddenly realized that I had to have Nick's baby footprints. I called St. Joseph's Hospital where Nickolas was born and they told me what I had to do in order to request his birth records, which would have the copy of his precious footprints. The next day I had to call the hospital back to confirm some information and the person on the phone asked me what year Nick was born. I told the lady that Nick was born in 1982. She then proceeded to tell me that they only keep records for twenty-five years and that Nick's birth records had been destroyed! I could not believe it. I had no idea they could even do that. I hung up the phone and just began sobbing. Why? Why couldn't those footprints have just been there? It doesn't seem like such a big thing...but right now, to me, the copy of those little feet mean everything. I am so heart sick over this. I love you my sweet boy. Please come home.

"I dropped a tear in the ocean. The day you find it is the day I will stop missing you."

Quiet In My Town

Where are you my son?
Can you see the light?
I keep it burning just for you.
Can you find your way back to us?
We miss you so.
Nothing is the same without your loving presence in our lives.
In the quiet of the night my heart feels the pain.
Can you hear me cry?
I pray you are happy in the far, far away.
Can you feel the love we are sending you?
Please come home and sit with me for a while.
I love you always and forever, my sweet sweet boy.
Mom


"Love must be as much a light, as it is a flame."
~Henry David Thoreau

"Today I heard the sound of birds and I wish that I was anywhere but here...." ~Civil Twilight

In This Wild Place

Has it been six months?
It seems like less.
It feels like more.
I lack energy to care
I miss you so.
I would sell my soul for one more glimpse of you.

I love you more than a wagon full of puppies.
Please come home my sweet boy. Mom

Storm the Hill 2010: Make Your Mark

Please take a moment to check out the IAVA's Storm The Hill video and site. The Iraq and Afghanistan Veterans of America organization is doing great work to make sure veterans are seen and heard. They will be in Washington DC all this week speaking with Congressman and Senators on the "hill" in an effort to keep lines of communication open and make sure that the the issues concerning our returning vets are being addressed. I hope everyone will take a moment to check it out and figure out how you can help!

Writing About Trees

I frequently tramped eight or ten miles through the deepest snow to keep an appointment with a beech-tree, or a yellow birch, or an old acquaintance among the pines.
~Henry David Thoreau

My dear sweet son, how I wish you were here with us to see all the snow. How I wish you could be here snowed in with your family. How I wished so desperately for you to remain here with us on earth. How I wish I never had to have a conversation with you about where and how you wanted to be buried. How I wish I could take that pain from my mother's heart. How I wish I could hold you in my arms and tell you that everything was going to be alright and you would be able to breath again! How I wish that things had turned out differently for you and thus for all of us who love you so and are grieving so hard for you every day. How I wish that just one person had looked a little harder at you and saw the things that I did. How would things be changed? How will I ever learn to live my life without you?

When I look back on last year at this time, all I can remember is how sick Nick was all the time. It breaks my heart to read my notes on his cough, his lungs, his "blasts" back in the CNS despite the IT chemo, the constant battle to get someone to tell me why Nick was feeling so poorly almost five months post transplant.

After Nick's discharge from his Xmas/New Year's admission of January 2009, Nick was being seen in the clinic for his treatments. The "clinic" is not where you want to be unless you are well on the road to recovery. For Nick this was not the case and for some reason Nick's condition just kept going in the wrong direction. The issue is that no one seemed to be paying attention to the subtle changes that were happening. No one was doing a physical or taking a history. No one was taking the time to sit down and actually make an assessment. No was actually looking at the VS that were written down on a piece of paper and entered into a computer with each clinic visit. No one was listening to a distraught mother and excellent nurse who put all this information right in front of their noses and still no one listened, no one took heed, no red flags went up, nothing.

The signs were all there and they were plentiful. The problem was no one was reading them. No one really took the time to get to know Nick in that clinic so Nick became a number. Nick fell through the cracks of a system overloaded with patients. A system with not enough nurses and not enough attention to detail. A system full of very sick patients with no one to listen to their concerns or pay attention to their problems. In Nick's case, attention to fine detail was needed, Nick did not get that attention and now he is forever gone from my life.

I want someone at Johns Hopkins to take responsibility for this flawed system. I want people to understand the pain they have caused me, my family, and so many who loved Nick. I want them to live up to their own publicity!

Welcome to The Johns Hopkins Hospital

"From the moment you arrive at Johns Hopkins, you become part of a long tradition of distinguished health care. Since our doors opened more than a century ago, our mission has been excellence. We strive to lead the world in the diagnosis and treatment of disease and to train tomorrow's great physicians, nurses and scientists. Above all, we aim to provide the highest quality health care and service to all of our patients.

Our commitment to excellence shows. We continually make news, introducing new therapies and furthering medical discovery. We know, however, that good care involves more than good medicine. That's why our concern for you extends to every aspect of your stay. We want your experience at Johns Hopkins to be as pleasant and as comfortable as possible. "

Does "comfortable as possible" include spending the rest of your life buried beneath a tree?

Because no one medical person chose to "see" my wonderful son, I will never see him again. Nick's future and mine as his Mom are forever gone. My life is forever altered. Now I find myself writing about grief, writing about mourning for a child lost, writing about trees.

And see the peaceful trees extend their myriad leaves in leisured dance-
they bear the weight of sky and cloud upon the fountain of their veins. ~Kathleen Raine

A man is a bundle of relations, a knot of roots, whose flower and fruitage is the world.
~Ralph Waldo Emerson

Always My Babies

My babies...I love them so, even with those crazy ass hats.

Wanna pack your bags, Something small
Take what you need and we disappear
Without a trace we'll be gone, gone
The moon and the stars can follow the car
and then when we get to the ocean
We gonna take a boat to the end of the world
All the way to the end of the world

Oh, and when the kids are old enough
We're gonna teach them to fly!

I love you my sweet boy I miss you so. Please come home and see you Mama. We taught you how to fly, didn't we Nick? Breathe easy my son.

Brayton's tricks

This is little Brayton. He makes me smile. He is battling Hemophagocytic lymphohistiocytosis (HLH), a rare disorder of the immune system that is treated like cancer with chemotherapy and bone marrow transplant. Brayton has already had a BMT and is still battling the many complications that come with his disorder and the BMT. Please pray for him. You can check out his Caring Bridge page at http://www.caringbridge.org/visit/braytonmartin